I will be posting the results of my targeted radiation far and wide once the radiation is completed and can determine subsequent PSA level. I would expect that if successful, and if cancer is not located anywhere else not having been identified in my specialized radiotracer/isotope imaging, my PSA should show up in ultrasensitive reading below 0.01ng/ml. I pray that will be so!
Merv, you definitely need to see a Medical Oncologist to perform diagnostics, imaging, and determining you best course of action based on your status from these tests. I tried to find such a Medical Oncologist near you but with no success. Closest I found was in South Brisbane at the Mater Medical Centre, 293 Vulture St., with haematologist Kerry Taylor. See more about him here:
http://www.blood2018.com/program/speakers/kerry-taylor.html so this would mean a trip to him after calling and arranging an appointment while at the same time advising that in view of this having to require travel from your location to South Brisbane you would want appropriate testing and imaging while at that appointment with anticipated treatment options discussed and begun. And ask if this could be arranged and the amount of time/days you may have to remain close by the Mater Medical Centre to accomplish what you perceive are necessary requirements based on the years you have been living with high prostate cancer PSA levels and inadequate physician expertise or care. Not sure if that can be arranged for you, or if others monitoring this forum know of Medical Oncologists closer to Bundaberg than Brisbane. For certain do not continue with the physicians you have been seeing since it is absolutely obvious they have no experience regarding understanding and treating prostate cancer. You need expert help and you need it in near time. If any reading this post live in Brisbane and could provide a place for Merv to stay should he come to Brisbane for an appointment and treatment, please post here your willingness to do so.
Good to hear from you and thanks for all that info.
My ADT journey is now at the 15 year mark (Gleason 8) after failed radical in 2003 - age now 72.
Continuing Lupron and just over 4 years on Enza now.
Enza on a clinical trial - the only way I can access it affordably in Australia.
I cannot change my treatment regime and stay on the trial so am constrained in that sense.
My PSA continues just under or just over 1.0
Was put on (and remain on) Metformin for type 2 diabetes before starting Enza.
Am getting more benefit from Enza than most of the guys on the trial.
Some recent comments that Metformin may help to reactivate Enza - not sure about that.
My MO mentioned last visit that he has another patient still going strong on Enza after 8 years.
Will check to see if he is also on Metformin.
My pathology is very good although Vit B12 is a bit low - presume due to Metformin from your comments.
Only lesion in my pelvic lymph node - rest of body clean (CT and bone scans) after 15 years.
These scans pretty primitive but still hard to get more sophisticated ones in Aust.
I am amazed that the cancer may not have spread from the one location in 15 years!
My plan is when Enza starts to fail I consider perhaps some Abiraterone or some form of radiation to the lymph node.
In the meantime will stick with the Enza and clinical trial.
Good luck with your radiation treatment and please keep me posted on your progress.
Very happy to follow in your footsteps on this one.
Hi Darby I hope your doing much better. I felt I had to say something. I started on Lucrin a year ago today. My adverse reaction has been minimal. No hot flushes except maybe a little in bed sometimes. Psa has continued to drop 3.6 last time. However I took up the Manplan soon after and continue to do it at home.
It has been very beneficial and I'm sure its played a big part in my success so far. Very little weight gain, largely muscle. One thing that we have done for the last 6 and a half years, since my wife's brain tumor discovery, is make a juice of beetroot, carrot, celery, ginger and apples every second morning. I'm sure that has been of great benefit with other changes in our life style. Inspite of my restricted bladder capacity etc my kidneys are first rate, constipation is not really too much of an issue and BP is 120/60.
So following an exercise program has been positive for me.
I am really sorry about your plight and a couple of others who have had similar experience.
You have now become a well informed patient but it may be too late.
To hell with those STUPID doctors who have played with your life!
Hope you will find a way to fight with this insidious disease and protect your life.